Development of a patient‐reported outcome instrument to assess complex activities of daily living and interpersonal functioning in persons with mild cognitive impairment: The qualitative research phase

Gordon, Mark Forrest; Lenderking, William R.; Duhig, Amy; Chandler, Julie; Lundy, J. Jason; Miller, David S.; Piault-Louis, Elisabeth; Doody, Rachelle S.; Galasko, Douglas; Gauthier, Serge; Frank, Lori

doi:10.1016/j.jalz.2015.04.008

Cited by 23 publications

(29 citation statements)

References 28 publications

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“…Six studies included explicit prioritization of outcomes through ranking or survey responses from stakeholders [11], [22], [24], [27], [34], [38]; the rest included relevant material in the form of quotations and themes from interviews or focus groups that was used to infer the importance of outcomes from stakeholder perspectives [10], [12], [21], [25], [26], [28], [29], [30], [31], [32], [33], [35], [37], [39], [40], [41], [42], [43].…”

Section: Resultsmentioning

confidence: 99%

What outcomes are important to patients with mild cognitive impairment or Alzheimer's disease, their caregivers, and health‐care professionals? A systematic review

Tochel

Smith

Baldwin

et al. 2019

Alz & Dem Diag Ass & Dis Mo

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Introduction Clinical trials involving patients with Alzheimer's disease (AD) continue to try to identify disease‐modifying treatments. Although trials are designed to meet regulatory and registration requirements, many do not measure outcomes of the disease most relevant to key stakeholders. Methods A systematic review sought research that elicited information from people with AD, their caregivers, and health‐care professionals on which outcomes of the disease were important. Studies published in any language between 2008 and 2017 were included. Results Participants in 34 studies described 32 outcomes of AD. These included clinical (memory, mental health), practical (ability to undertake activities of daily living, access to health information), and personal (desire for patient autonomy, maintenance of identity) outcomes of the disease. Discussion Evidence elicited directly from the people most affected by AD reveals a range of disease outcomes that are relevant to them but are not commonly captured in clinical trials of new treatments.

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Section: Resultsmentioning

confidence: 99%

What outcomes are important to patients with mild cognitive impairment or Alzheimer's disease, their caregivers, and health‐care professionals? A systematic review

Tochel

Smith

Baldwin

et al. 2019

Alz & Dem Diag Ass & Dis Mo

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“…Functionalities available through the PHR are intended to be used by patients, rather than by providers, and include appointment scheduling, prescription refill, and secure messaging [ 6 ]. The newly developed PHRs created a complementary source of clinical data such as patient-reported outcomes [ 7 - 9 ], physician ratings [ 10 ], medication adherence [ 11 ], and social support [ 12 , 13 ], and they allow for new data analytics techniques to detect, measure, and predict health-related outcomes. The United States has been a leader in the field of PHR data analytics.…”

Section: Introductionmentioning

confidence: 99%

Patient Health Record Systems Scope and Functionalities: Literature Review and Future Directions

2017

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BackgroundA new generation of user-centric information systems is emerging in health care as patient health record (PHR) systems. These systems create a platform supporting the new vision of health services that empowers patients and enables patient-provider communication, with the goal of improving health outcomes and reducing costs. This evolution has generated new sets of data and capabilities, providing opportunities and challenges at the user, system, and industry levels.ObjectiveThe objective of our study was to assess PHR data types and functionalities through a review of the literature to inform the health care informatics community, and to provide recommendations for PHR design, research, and practice.MethodsWe conducted a review of the literature to assess PHR data types and functionalities. We searched PubMed, Embase, and MEDLINE databases from 1966 to 2015 for studies of PHRs, resulting in 1822 articles, from which we selected a total of 106 articles for a detailed review of PHR data content.ResultsWe present several key findings related to the scope and functionalities in PHR systems. We also present a functional taxonomy and chronological analysis of PHR data types and functionalities, to improve understanding and provide insights for future directions. Functional taxonomy analysis of the extracted data revealed the presence of new PHR data sources such as tracking devices and data types such as time-series data. Chronological data analysis showed an evolution of PHR system functionalities over time, from simple data access to data modification and, more recently, automated assessment, prediction, and recommendation.ConclusionsEfforts are needed to improve (1) PHR data quality through patient-centered user interface design and standardized patient-generated data guidelines, (2) data integrity through consolidation of various types and sources, (3) PHR functionality through application of new data analytics methods, and (4) metrics to evaluate clinical outcomes associated with automated PHR system use, and costs associated with PHR data storage and analytics.

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“…Some existing outcome instruments, such as TOPICS-MDS, are already based on patient report. 9,10 These outcome sets however have mostly been developed without consulting patients and caregivers about what is relevant to them. A few former studies that took into account patients' perspectives mostly focused on speci c disease outcomes or on experiences with speci c treatments.…”

Section: Introductionmentioning

confidence: 99%

Prognosis of Alzheimer’s disease; what do patients and care partners want to know?

Mank¹,

Maurik²,

Bakker³

et al. 2020

Preprint

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Background: Prognostic studies in the context of Alzheimer’s disease (AD) mainly predicted time to dementia. However, it is questionable whether onset of dementia is the most relevant outcome along the AD disease trajectory from the perspective of patients and their care partners. Therefore, we aimed to identify the most relevant outcomes from the viewpoint of patients and care partners. Methods: We used a two-step, mixed-methods approach. As a first step we conducted four focus groups in the Netherlands to elicit a comprehensive list of outcomes considered important by patients (n=12) and care partners (n=14) in the prognosis of AD. The focus groups resulted in a list of 59 items, divided into five categories. Next, in an online European survey, we asked participants (n=232; 99 patients, 133 care partners) to rate the importance of all 59 items (5-point Likert scale). As participants were likely to rate a large number of outcomes as ‘important’ (4) or ‘very important’ (5), we subsequently asked them to select the three items they considered most important. Results: The top-10 lists of items most frequently mentioned as ‘most important’ by patients and care partners were merged into one core outcome list, comprising 13 items. Both patients and care partners selected outcomes from the category ‘cognition’ most often, followed by items in the categories ‘functioning and dependency’ and ‘physical health’. No items from the category ‘behavior and neuropsychiatry’ and ‘social environment’ ended up in our core list of relevant outcomes.Conclusions: We identified a core list of outcomes relevant to patients and care partner, and found that prognostic information related to cognitive decline, dependency, and physical health are considered most relevant by both patients and their care partners.

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Development of a patient‐reported outcome instrument to assess complex activities of daily living and interpersonal functioning in persons with mild cognitive impairment: The qualitative research phase

Abstract: This work represents a series of initial steps in the development of this rating scale. The next steps are to conduct psychometric analysis and evaluate the role of insight.

Cited by 23 publications

References 28 publications

What outcomes are important to patients with mild cognitive impairment or Alzheimer's disease, their caregivers, and health‐care professionals? A systematic review

What outcomes are important to patients with mild cognitive impairment or Alzheimer's disease, their caregivers, and health‐care professionals? A systematic review

Patient Health Record Systems Scope and Functionalities: Literature Review and Future Directions

Prognosis of Alzheimer’s disease; what do patients and care partners want to know?

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